Giving Ferriprox A Chance
When we decided to give Ferriprox a chance, we weren’t aware how hard getting your health insurance company to approve a tier 5 drug for off-label use is. Luckily, we have a hematologist experienced in gaining approval for high-level medications for his patients. Five months passed from when Gary was first diagnosed until the first bottle of Ferriprox arrived at our doorstep. Excitement, hope, anxiety, and worry all packed into one little box.
“Because Ferriprox will be used for years in most patients, we came up with a schedule to avoid iron deficiency. During the week when you’re taking the medication, you should avoid iron-rich foods and vitamin C 2 hours before and after taking the medication. Vitamin C-rich foods include tomatoes, grapefruit, and oranges. On the weekends, to replenish some of the lost iron reserves, eat a steak or something rich in iron. But not iron tablets. Iron tablets take a long time to digest (days) and will interfere with absorption of Ferriprox.” – Dr. Michael Levy
We decided to follow Dr. Levy’s recommendations because we felt an obligation to make the most of every dose of Ferriprox.
Trying to follow a reduced iron diet is a lot harder in reality than in theory. It took more than a few months to work out but other than the occasional invitation out, we can find Gary a reduced iron option. In the U.S. unless you can afford organic you will find most commercial grains, cereals, bread, juice, etc. pumped full of vitamin and mineral enrichment.
The Weekday Diet Guideline
- Zero commercial foods with high added iron enrichment
- Limit your portion size of food containing iron to 2-4% of the daily recommended allowance.
- Drink and eat foods with iron blocking properties
- Limit meat choices to either chicken, pork or some fishes
- Avoid foods that aid in iron absorption
- No alcohol
The Weekend Diet Guideline
- Red meats, organ meats or seafood
- Foods containing sugar
- Beer or Red Wine allowed
- Foods that aid in iron absorption
- Commercial foods with high iron enrichment
Tracking Ferritin Levels
One of the levels we find helpful to follow closely is your Ferritin reported with your monthly blood test. Ferritin is a protein cage structure found in your bloodstream that binds to the excess iron until it’s ready to be used by your body. (In the earlier Thalassemia study presented to the FDA Ferriprox was considered a successful treatment for patients who experienced at least a 20 percent decrease in serum ferritin.)
If your ferritin level stays stable (or rises), then it’s an indication your medication has to work that much harder. Lowering the serum ferritin levels gave us a goal we were able to measure monthly to make sure the diet is working.
Heme or Non-Heme
Dietary iron comes in two forms: heme and non-heme. Plant based foods are classified non-heme iron sources. Heme iron is in all animal protein; it is the most readily absorbable type of iron with the highest levels coming from red meat, organ meats or seafood.
Since we didn’t want to follow an entirely vegetarian diet during the week, we limit animal protein choices to pork, chicken, or some varieties of fish. Roasted turkey breast is also an option.
Commercially iron enriched foods may be legally classified as non-heme if they do not use animal-based iron sources during manufacturing. This product will qualify as a vegetarian or vegan food choice, but if you research their iron source, you find it will always be a food-safe metal-based additive. Who can forget the magnet and cereal demonstration?
If your food label lists: Iron, Iron Salt, Iron Gluconate, Iron Sulfate, Fergon, Ferralet, Simron, Ferrous Fumarate, or (ironically) reduced iron then it was made with a metal-based iron source. This type of additive is more accessible by your system than natural protein based heme sources. Save them for the weekend.
We grow most of the vegetables we eat so we use food combining to help block some of the non-heme plant iron from being absorbed.
Evidence Food Combining Works
Certain foods and beverages will help block your body from absorbing the iron that you are eating. A 1982 study tested the effect of beverages on iron availability from meals.
Each subject first had a meal consisting of a ground beef patty; mashed potatoes, string beans, and water. In following days, the water was replaced by green tea, coffee, and orange juice. Green tea reduced iron absorption by 62%, coffee 35% and when orange juice was substituted iron absorption increased by 85%. ¹
The flavonoids in berries, coffee, and black tea bind to the iron either in the digestive tract or bloodstream making the body unable to use the iron. Polyphenols found in coffee, tea, and chamomile tea also bind to iron. Calcium-rich dairy foods that also contain lactoferrin will also help decrease iron availability.
Pectin fiber was tested in a small study of 13 hemochromatosis patients with the average daily dose of 15 grams per adult. Nonheme iron absorption decreased by almost half due to the binding properties of the indigestible fiber in the pectin. Eggs, whole grains high in phytates and (contrary to popular belief) some leafy greens are all natural iron inhibitors.
There is real evidence that the Five/Two diet and dosing cycle is the best approach. A study in 2000 showed the body would adapt in self-defense if a food supply is kept low iron for an extended period.
“In a human study, Hunt and Roughead reported a decrease in nonheme iron absorption among men consuming high-bioavailability diets and an increase among those consuming a low-bioavailability diet after ten wk of feeding, suggesting that individuals adapt to the effect of dietary factors on iron absorption. Although vitamin C is known to increase iron absorption from single meal feeding studies, 2 g/d vitamin C supplementation for 16 wk had no effect on iron stores (10). The above studies suggest that the effect of dietary factors on iron absorption is dampened with longer periods of consumption and that there is the possibility that adaptation may occur over prolonged exposure to iron inhibitors or enhancers.” ²
Just Tell Us What You Eat
In the end, it’s pretty simple. Here are a few examples:
Breakfast choices during the low iron phase:
- Milk, Iced Green Tea, or Coffee with meals
- Organic Non-Enriched Breads
- English Muffin, plain, unenriched
- Biscuits, plain, unenriched
- Low iron cereals (2% or less per serving)
- Canadian Bacon
- Cheese, cheddar or jack
- Sweet Potato hash browns
- Sweet Potato Leaves
- Summer Squash
Lunch might be:
- Canned white tuna (packed in water) made into a salad with dried cranberries, jicama, pickled watermelon or any other crunchy things. We will put it on romaine leaves, Kavli Crispbread or Wasa
- Turkey breast/cheese on non-enriched bread
- Homemade Pizza, non-enriched flour, whole milk mozzarella, pesto or fresh basil, mushrooms
- Stuffed Baked Potato, Greek Yogurt , Cheese, Bacon, Onion
- Chicken or Vegetable Soup
- Glutino Pretzel Sticks (0% iron)
- Chicken, Pork, Tilapia, Cod, Salmon
- Two fresh vegetables or salad (No light colored beans (i.e., cream zipper, baby lima, cannellini), southern or cowpeas)
- Organic long grain brown rice or potato
- Any Pasta is homemade from unenriched flour
Our favorite dessert is peaches or bananas topped with Greek yogurt, agave, granola and dark chocolate chunks
We do eat some tomatoes or tomato sauce if the meal is relatively low iron AND we do not have meat. Vitamin C and olive oil enhance iron absorption. Compounds in both garlic and onion may boost the bioaccessibility of iron by 70% and zinc 160% in high fiber plant foods like grains, beans, and lentils, according to a 2010 study from India.³
So if you are using a commercially made iron enriched pasta and any meat in the sauce (think lasagna or spaghetti with meat sauce), it might be a better choice to have on the weekend. Sugar, another hidden landmine, also enhances iron availability. Your body will throw you under the bus when it comes to the sugar cravings of a reduced iron diet.
The Big Question
“Does it work?” If you noticed above, you’ll see Gary’s serum ferritin level was 68.4 in November 2014. May 2015 it came in at 30.5, well over a 50% reduction in 6 months. This diet is not for everyone. It requires planning and time spent reading labels labels labels if you buy a lot of commercially prepared foods. I’ll put together a list of brands you can buy in the U.S that are low iron choices.
UPDATE DECEMBER 2017: Gary has been following this diet plan for 30 months now. His serum ferritin level now stays between 11.2 and 9.1. His lowest level recorded was 8.8. He cycled off his Ferriprox for a week, and we iron loaded his diet until he was back in the mid 9 level.
Once again I need to bring up everyone in the household who is not on Ferriprox. Please be sure to have some iron-rich choices available or maybe consider an iron supplement. It only takes 120 days to become iron deficient in this type of restrictive diet. I found this out the hard way.
- Hallberg, L. & Rossander, L. (1982) Effect of different drinks on the absorption of non-heme iron from composite meals. Hum. Nutr. Appl. Nutr. 36A, 116–123.
- Hunt, J.R. & Roughead, Z.K. (2000) Adaptation of iron absorption in men consuming diets with high or low iron bioavailability. Am J. Clin. Nutr. 71, 94–102
- Gautam,S. , Platel,K., & Srinvasan,K. (2010) Higher bioaccessibility of iron and zinc from food grains in the presence of garlic and onion. Agric. Food Chem online